July 2016

07/26/2016

Kai’s longtime occupational therapist, Emily, made a suggestion last spring that it might be time to think about winding down. She said she was running out of goals for him.

Emily has been seeing Kai since he was two. She came to our house when Kai qualified for Early Intervention. Ryan was weeks old. Kai is now old enough to say sarcastic things like, “Duh,” in response to a question. Ryan is tall enough to ride roller coasters. We’ve been doing this a long time.

I got kind of panicky when Emily suggested we might take a break. For one thing, he still needs…something. He needs heavy input. He likes to crash into the big pillows and roll himself through the squeeze machine. He gets a little bonkers if we skip a couple of weeks. And yet, we are running out of goals. We’ve been through coordination goals, catching and throwing, fine motor, shoe-tying, determining left from right on yourself and somebody else. Emily said she was reaching this summer—they’re working on keyboarding.

Emily lives in my neighborhood, so she knows what a slog it is to get out to the therapy center. It’s a four-hour endeavor, and most of that is spent in the car. I whale through audiobooks—last summer I bought them according to length (I spent 95 hours on an exhaustive biography of Elvis Presley). There are a lot of days that I struggle to stay awake on the drive and have roll down the windows and sing or call Scott and make him talk to me until he has to run to a meeting.

“Think of all the free time you’d have,” Emily said.

And it’s true. Four hours is a long time.

Especially since we go to the center not once a week, but twice—on Thursdays, we go for group therapy. The group that Kai attends on Thursdays has a parent component to it, where we are supposed to talk about our kids’ struggles with ADHD. Last Thursday, however, I hijacked group time to talk about no longer doing OT.

“Who am I if I’m not doing this every week,” I asked. “And he still needs…He still needs help.”

The director of the group suggested that it might be time to find Kai ways that he can get heavy sensory input by himself through sports, which we would have time for if we weren’t always hauling ourselves to therapy.

All of that was true. Kai does need to begin to take ownership of his needs, and we would have time for things like Ninja training, which is what Kai calls martial arts. Or swimming lessons. Or whatever. The director said that her son found that he could get a lot of his sensory needs met by skateboarding and had me almost convinced that turning Kai loose in the world on a piece of wood with wheels was a good idea.

I still felt a little lost, though. Is it really time to be done? Kai’s not…I mean, he can’t…But…

My attachment to the center and this course of therapy—is it habit? Muscle memory? What if everything falls apart when we take these things away?

“We’ll still be here,” the director said, “if you need us.”

I nodded. I guessed that we could try some form of tapering down. Besides, we would still be coming to the center for speech.

After group was over, Kai’s speech therapist said she wanted to talk to me.

She thought Kai was ready to take a break from speech, too.

:::

A few days later, I was on the phone with some folks from Rush Hospital’s autism treatment center. They were looking for some kids Kai’s age to participate in a social skills study which would, in essence, be free therapy. Plus it’s only a few blocks from my house.

A research assistant was asking me questions about Kai, like when was he diagnosed and is he on any medications.

“And what is his highest form of communication?” he asked. “Would you say he’s nonverbal, nonverbal but uses assistive technology, has some words and phrases, or speaks in full sentences?”

There but for the grace of God, I thought. “He speaks in full sentences,” I replied.

“Can you give me an example of a full sentence?”

I drew a total blank at this. Kai talks. He asks for what he wants and will give you a full description of any dinosaur. You can ask him if he knows what the opposite of nocturnal is because you have no idea, and he will tell you that it’s diurnal, and then you’ll ask him how he knows that, but he can never find his shoes, and he’ll laugh and say, “Good one, Mommy.”

I didn’t know what to say, so I said, “When he has to go to the bathroom, he’ll say that he needs to see a man about a horse.”

The research assistant was quiet on the other end. “Is that your answer?” he said, finally.

I said that I supposed it was.

:::

After I hung up (Kai qualified for the study—the effect of oxytocin on social skills) I was thinking about Barb, Kai’s speech therapist at the center, saying to me that Kai has so much language that he was ready to be done for a while.

“How do you feel about that?” she’d asked me.

The truth of it is that I always fear that people will take Kai’s services away, that he’ll rock school so much that they’ll take away his support. But then, that’s what we want, isn’t it? And Barb isn't school, for whom Kai is a budget line item. Barb knows Kai, she likes him. Her eyes got a little watery talking about saying goodbye.

“It’s a good thing,” Barb had said.

And it is. It really is.

But, he still needs help. He hasn’t made a single friend at camp. One of the kids stole his hat, and in the process scratched his forehead, leaving a one-inch gouge in his skin, and Kai couldn’t tell who had done it.

He still needs…

He still has autism.

:::

Friday was “bring your bike” day at summer camp. I, of course, completely forgot and had to go back home and get the kids’ bikes. This was no small feat considering it was 250 degrees out, their bikes are heavy and awkward. They both still had training wheels.

I sort of hated to bring Kai’s little-kid bike to his big-kid camp. I wondered if he would get made fun of for his training wheels. Later that day I called this special needs recreation place in Aurora that gets special needs kids riding, and left a message. I thought about bargaining with Emily, that I would consider taking Kai out of OT after she got him riding a bike, and not a moment before.

When I picked the kids up that afternoon, I asked if they’d had fun. They said they had.

“My bike is so heavy,” Kai said. “It’s hard to go uphill.”

“You know what would make it feel much lighter?” I asked.

“What?”

“If we took off the training wheels.”

Kai seemed to consider this.

“Tomorrow,” I said. “We’re going to do it tomorrow.”

So we did.

And this happened:

Suddenly, Kai could ride a bike, and as I watched him pedal away from me, I found to my surprise that rather than having any sense of sunrise-sunset nostalgia for a little boy who just discovered freedom, I was deeply, profoundly relieved. I could begin to imagine that we could, maybe, begin to let go of our old routine, our old notions of what we need.

In group last week, I took a moment to wallow in self-pity.

“The thing about autism is that there’s nobody steering this ship but me. How will I know what our next steps are?”

The director, who has her own, grown, special needs son, was kind enough not to judge me for my brief lapse into whiny petulance. “That’s the case with any disability,” she said. She said we’d figure it out. That Kai would figure it out.

So I don’t know what we’ll do in the fall. I think Kai still needs social skills groups, and I’m trying to find one. He needs massive help managing his ADHD. There’s that oxytocin study. I told Scott to get Kai a skateboard. And as Saturday became Sunday and we found ourselves back at the park, Kai whizzing past us on his bike, the brim of his hat peaking from under his helmet, I realized that I was beginning to feel a glimmer of freedom, too.

07/08/2016

Kai’s teacher has been making references to the fact that Kai is “getting older,” by which she means he is beginning to make some changes, these changes being primarily a marked increase in sullen defiance and a tendency toward eye-rolling. He ripped up his paper in health class right in front of the teacher. He says the word, “Fine,” in response to being told what to do at school with as much passive-aggressive disgust as any teenager.

We haven’t seen this so much at home. Or maybe since he has fought me tooth-and-nail over Every. Little. Thing. for the whole of his life that a day his teacher calls him defiant is just a day I’d call Thursday. But there have been some developments around here that signal some of the changes she’s talking about, such as his not wanting me to see him naked, or giggling at the word, “underwear.” Just yesterday he was watching something on YouTube and exclaimed, “What the hell?” and then looked at me and apologized, which is the very beginnings of the possibility that one day he might actually have a filter.

But then there is, apparently, a flip-side to these changes. Some of them are good. Astonishing, really.

Last week I picked out the coat I wanted him to wear for his field trip.

“Not that one,” he said, reaching for a lighter one.

“Kai, you’re going to be outside all day. You need a warm coat.”

He zipped up the one he’d chosen and said, calmly as can be, “Mommy, you always make me wear that coat and I’m always too hot and it just goes in my backpack. This one is fine.”

The 1-2-3 count about to form on my tongue, the one he always obeys because he knows that I am serious. But with great effort I shook off the impulse, the muscle memory of doing all of the deciding for him, this boy who seemed to want to decide himself if he’s too hot in one coat vs. another. He seemed so reasonable, so capable in that moment that I didn’t press him, even if I was worried he’d be cold all day.

“Okay,” I said, putting the heavy coat back into the closet. “I like the way you used your words.”

Pictures from the field trip to the zoo that day show Kai clowning around with his friends, no longer even wearing the lighter jacket in the weak May sunshine. He had been completely right, and had made me understand that in tiny (very tiny), incremental steps, I am going to need to learn how to let him go.

:::

There are some ways in which Kai is like a toddler. His lack of impulse control makes him unpredictable. He disappears, wanders, damages things. I asked our neurologist if any of the ADHD medications had a component to address this, and he said no, that I would have to continue to watch Kai oh, so closely, that he still absolutely need his paraprofessional at school.

But the coat incident started the ball rolling for me to try to give him some more leeway. He’s been asking to do some chores to earn things he wants. Chores are problematic around the house partially because it makes Scott nuts when, say, the dishwasher is loaded incorrectly or there’s any water on the floor ever, and partially because anything that I trusted Kai to do (clean the nose-prints on the back door, for example) required effort on my part to remind him. Finally, I landed on the perfect chore.

“Kai,” I said, “you are now in charge of cleaning up the dog poop.”

He let out a moan of disgust. “Why can’t I mow the lawn?”

“Because you have to pick up the poop before you mow it anyway.”

He was quiet for a few moments.

“This is the chore I want you to do, Kai.”

He sighed.

“Fine.”

And so I went outside with him, armed with poop bags, and showed him how to hunt for dog turds, carefully folding the bags back on themselves so as not to get poop on his hands.

“This poop smells,” he said by way of complaint, but he stayed doggedly with it. (See what I did there?)

When we were done we had several bags filled with poop that I planned to take out to the alley next time I left the house.

“Would it be extra helpful for me to put these in the garbage?” Kai asked.

I stared at him. When in this life has he ever been extra helpful?

“Yes,” I said at last. “Take them out to the alley and put them in a black garbage can.”

I had the thought that I should go out there with him, and decided instead to see if he could do it without me micromanaging the entire process—opening the garage door, reminding him to look both ways in the alley, of where the proper garbage can was. I went inside and stood in the kitchen window, which faces the garage window, through which I could see first the door going up, then Kai’s baseball-capped head approaching the alley. I saw him look around. I saw him head toward the recycling bins. I started loading the dishwasher, thinking that I would just move the poop later, when Kai came bursting in.

“I did it!” he said, clearly pleased. “I wasn’t sure which black garbage can so I went across the alley and used that one.”

I praised him lavishly and checked off his chore chart with great flourish.

“Now can I mow the lawn?” he asked.

:::

Last night I advised kai that he needed a bath, noting the dirt under his fingernails.

“You also need your nails cut,” I said.

I asked him to start his bathwater, telling him I’d be up later for the nails, but got distracted by Ryan wanting a bedtime story and missed my window when Kai was captive in the bathtub.

I found the nail clippers and went downstairs, where Kai was watching YouTube videos on Minecraft.

“Let’s cut those nails,” I said to him, grabbing a hand.

And then I looked closer.

All of his nails were neatly trimmed.

“I already did it,” he said.

“You did?” I asked, incredulous. He usually fights me until I threaten to take away his iPad, but he’d cut his own nails, by himself and without any nagging or reminding.

Stunned, I resisted the urge to inspect the job he’d done, and instead told him that I was really, really proud of him.

“How’d you get to be so big?” I asked. He grinned at me.

And then he asked me to make him some popcorn, get him some ice water, things that, God help me, he could do himself.

And I reminded him as such, and retired to the living room with a glass of wine.